Crystal Lake nonprofit helps resident with epilepsy

Ben Lukas was 25 at the time. He hadn’t been in a car accident or experienced any head trauma.

“I came home from work, and about a couple of minutes later, my brother found me on the floor having a grand mal seizure,” Lukas, now 29, said.

Lukas had three grand mal, or tonic-clonic, seizures that day, earning him a diagnosis of epilepsy.

Over the next four years, in his calendars and records, he has recorded more than 700 seizures,
although that number is likely about a third of the number of seizures he has actually experienced, he said.

Some of those seizures are small where he loses awareness and others are full blown tonic-clonic seizures.

Because his epilepsy wasn’t controllable through medication – he tried between seven and 10 different kinds – and he didn’t always know when one was going to hit, Lukas couldn’t drive or work.

“It was really scary,” Lukas said. “All of a sudden, everything changed. There was no more driving. I haven’t driven in four years. No more working. Just no more of the usual things that I used to normally do: going out with friends or doing any of those normal activities. Everything like that kind of stopped right then and there.”

All that might change though.

On Oct. 15, Lukas had a right cranial lobotomy.

A neurosurgeon at Rush University Medical Center, Dr. Richard W. Byrne, removed about a quarter inch piece of his right hippocampus. That’s where doctors had pinpointed a concentration of scar tissue and brain damage they think caused the seizures.

And so far, the surgery seems to have worked.

Lukas hasn’t experienced any seizures in the seven weeks that have followed. That’s the longest he’s been without a seizure since he was diagnosed.

He did have what is called an aura – Lukas describes it as a funny, deja vu feeling that usually progresses into a seizure – but this time the seizure didn’t happen.

If he makes it to a year, he’ll be in the all clear, Lukas said.

Lukas credits Options & Advocacy for making this possible.

“They were very instrumental in getting this process started for me when I didn’t have insurance,” said Lukas, who is so enthusiastic he wants to work for them someday.

“It had been three years of just a standstill, of just waiting for insurance to kick in, waiting for the disability process to go through, and once all that did, it was just phenomenal how everything just accelerated and took off.”

The McHenry County nonprofit, which is based out of Crystal Lake, guided him through the process, providing support groups, scheduling his appointments, and setting him up with Dr. Marvin A. Rossi, an epilepsy specialist from Rush.

“When we met him, he was kind of lost because he was just being treated with medication and nothing else,” said Kim Babiarz, who handled Lukas’ case file. “He just wanted to be better. He just wanted to get back to his old life.”

Because there are no epileptologists or epilepsy centers in McHenry County, Rossi began working with Options & Advocacy, visiting McHenry County in-person once a month and conducting appointments via iPad using Health Information Privacy Act-compliant, telemedicine software.

It is the only group that is using this technology to help people with epilepsy as far as they are aware, said Nancy Monica, who manages the epilepsy support program at Options & Advocacy.

This teaming up of a medical center and a social services agency is also unique in the epilepsy field, she said.

“With epilepsy, you’re not just treating the medical piece of it,” Monica said. “It really involves the whole person’s life. You can have issues with driving if your epilepsy’s not controlled. You can have issues with employment. You can go to school, but you need to learn a little different way. There needs to be accommodations in the place.

“We’re there to help with all those pieces of epilepsy, and then the doctor treats the medical piece of epilepsy.”

The program is manned by three people and serves 425 people, she said. There is a six-month waiting list.

Options & Advocacy’s epilepsy program is looking to take this model of care nationwide. They have been applying for federal grants that would provide the funding for the Epilepsy Foundation to set up similar partnerships with other medical centers, Monica said.

Within Options & Advocacy, staff is looking to expand the telemedicine program, opening it up to patients with autism.

About Options & Advocacy

The McHenry County nonprofit provides social services primarily to people with developmental disabilities. The epilepsy support program was started in January 2010.